Upside Down Under

Understanding Meniere's disease

I had never heard of Meniere’s disease until I was diagnosed with it last summer. I didn’t know exactly what vertigo was either.

As I write this column, it was two years ago to the day that I began experiencing extreme dizziness for short periods of time.

On that day, April 4, 2014, Glen Froseth came back from lunch to find me in the bathroom with my shirt off. The room was spinning and I was sweating profusely.

I thought I had food poisoning as I had just finished eating a tuna sandwich.

A short time later, the Kenmare Community Hospital treated it as a stroke protocol and transferred me to Trinity Hospital in Minot.

I was in ER for seven hours until they determined I had vertigo, a condition Mayo Clinic describes as “an illusion of motion.”

It’s the strangest thing. It’s as if you are extremely drunk, yet completely alert and coherent.

It’s the most bizarre feeling you can imagine, so I did some research and learned about “benign paroxysmal positional vertigo,” essentially meaning calcium crystals in your inner ear get dislodged, often by head trauma.

This is where your balance originates and when the crystals are dislodged, you feel the dizzy sensation.

The best way to repair it is to see a chiropractor who does a procedure called the Epley Maneuver which puts the crystals back into place, stopping the dizziness.

Thus I began seeing a chiropractor in Minot. It didn’t appear to be helping so I went to see an ear, nose and throat specialist at the VA hospital in Fargo.

He gave me some medication and made the assumption it was Meniere’s disease, that includes vertigo, as well as ringing in the ear, fluctuations in hearing and fullness or pressure in the ear.

After numerous visits to Dr. Jones, he positively diagnosed Meniere’s and said he had exhausted every option at his disposal and transferred me to an otologist at Sanford Health in Fargo.

That doctor is Matthew Miller, a specialist in the anatomy and diseases of the ear. In fact, all he does is examine adult human ears.

Dr. Miller grew up in North Dakota, was educated at UND, as well as the University of Minnesota. He did his residency at the Oregon Health Science University and did his fellowship at Johns Hopkins University.

Knowing that, I made the assumption I was in good hands and saw him for a consult on Dec. 22.

At the time, I wasn’t having episodic vertigo, but he examined my left ear nonetheless.

At the end of January the vertigo did return and since that time it’s been a rough ride.

I’ve missed a lot of work, missed several newspaper interviews, missed two days of the state Class B basketball tournament and some days, couldn’t get out of bed.

On Feb. 24, I went back to Fargo and received an injection into my inner ear with a steroid called dexamethasone. It is designed to reduce inflammation in the inner ear, because unlike BPPV, with Meniere’s, canals in the inner ear become inflamed and cell walls burst, causing the dizziness.

I was hopeful but it wasn’t working so it was back to Fargo March 22 for another treatment. This time it was more painful than the first even though phenol was used as a numbing agent.

The dizziness episodes continued and less than two weeks later, April 1, I was back in Fargo for yet another visit.

This time, the injection was gentamicin, a super powerful antibiotic that actually destroys the balance cells in the inner ear. Dr. Miller said he would give me up to two of those shots in a month’s time. If that doesn’t work, surgery, cutting the vestibular nerve, is the next option.

Thus far, it appears to be have the vertigo in remission. Statistically, gentamicin nullifies vertigo in 90 percent of patients, but there’s a risk of losing some hearing. I took that risk and have lost some hearing, but no longer am I sweating profusely or vomiting because of the nausea.

Meniere’s remains a very misunderstood and mysterious disease. Apparently only 10 in 100,000 people get it and it isn’t contagious. But there are at least two of us in Kenmare diagnosed with it.

The injections have only been available six years, according to the British Medical Journal. Prior to that, surgery was the only option.

My grandmother Baker often got dizzy spells and spent that time in bed. One in three Meniere’s patients have hereditary predisposition.

Today there’s help in the form of these injections. Invasive perhaps, but you’ll get your life back.